Autism in Kazakhstan: Progress, Barriers, and the Roles of Civil Initiatives

In recent years, there has been a significant increase in the interest of both the professional community and the general public in Kazakhstan in the phenomenon of autism, primarily as a complex phenomenon affecting children's developmental trajectories, educational opportunities and social integration. According to the Ministry of Education of the Republic of Kazakhstan, more than 203,000 children in need of special educational conditions are registered in the system of psychological, medical and pedagogical consultations (PMPC). Of this number, about 16,700 are characterized by persistent difficulties in communication and social interaction, features often associated with autism spectrum disorders (ASD). 

Nevertheless, professionals emphasize that the above data do not reflect the real prevalence of ASD in the country. This is largely due to the low level of awareness among the population, insufficient training of specialists in the field of early diagnosis and limited accessibility of specialized services, especially outside major cities. The current PMPC model, which is designed to perform the function of initial assessment and routing, in practice faces overload and limited resources. As a result, the timeliness of diagnosis and the launch of necessary corrective measures during the critical period of formation of basic cognitive and communicative functions - before a child reaches the age of 3-5 years - is impaired. 

In parallel with these difficulties, the vector of state educational policy demonstrates a trend towards inclusiveness. In 2024, the National Model of Continuous Inclusive Education was approved, emphasizing the formation of a barrier-free environment within kindergartens and schools. Additionally, as part of the implementation of the state program for the development of education and science, a specific task has been set: by 2025, at least 70% of higher education institutions in the country should be adapted for the education of students with special educational needs. At the same time, in the absence of a comprehensive system of training of relevant specialists - including support teachers, school psychologists, speech therapists and defectologists - there is a serious possibility that the declared measures will be limited to a declarative level and will not be transformed into a sustainable and high-quality practice. 

The method of applied behavior analysis (ABA) is recognized worldwide as one of the most scientifically sound and clinically effective approaches to working with children with autism spectrum disorders (ASD). In the Kazakhstani context, interest in this methodology began to actively take shape after 2015 - it was then that the first parents and specialists who had undergone foreign training made attempts to introduce ABA in private practice. 

However, despite the growing attention, ABA therapy still operates outside the legal and institutional framework. There is no centralized system of certification of specialists and no approved state standards for training. Training is often provided on an individual basis, predominantly through online courses, the quality of which remains heterogeneous. In addition, the vast majority of educational materials are presented in English, which objectively limits the accessibility of the method for Kazakh-speaking professionals, as well as for parents who want to be involved in the correctional process at a deeper level. It is not always obvious to the observer, but the language barrier here becomes a factor of systemic exclusion. 

Along with methodological difficulties, the high cost of therapy remains a significant obstacle. Monthly costs for regular ABA sessions can range from 250,000 to 500,000 tenge (approximately 500-1,000 USD), making such services virtually unaffordable for most Kazakhstani families. Based on these data, it can be assumed that access to behavioral therapy in the current environment is the exception rather than the rule. At the same time, neither preschool organizations nor schools have the capacity to systematically integrate ABA modules into the educational environment. There are currently no state funding mechanisms, including insurance coverage or subsidies for specialized care. This problem is particularly acute in regions where access to qualified specialists is fragmented or non-existent. 

In conditions of limited state resources and insufficient comprehensive support for families raising children with special educational needs, initiatives formed within society itself come to the fore. An illustrative example of such civic involvement in Kazakhstan is the activity of the corporate fund “Bolashak”, established in 2011 by graduates of the state scholarship program of the same name. The main vector of its work is aimed not only at providing targeted assistance, but also at promoting the culture of philanthropy and building long-term mechanisms of social inclusion. 

Since 2015, within the framework of the flagship project “Every Child Deserves a School”, the Foundation has been implementing a large-scale initiative to create a network of inclusive classrooms. These specialized spaces operate in schools and kindergartens, integrating into the everyday educational environment. They are aimed at supporting children with autism spectrum disorders and other forms of neurodisability, allowing teachers and specialists to work with the child in a familiar and non-exclusionary environment. This is important to emphasize, because it is the availability of support in a natural educational environment that significantly increases the child's adaptive potential. 

At the moment, the Foundation manages 61 inclusive rooms in 22 cities of the country, where more than 800 children receive stable support. The work in these spaces is ensured by multidisciplinary teams: they include defectologists, speech therapists, psychologists and accompanying specialists (tutors). An equally important element of the system is educational work with parents: the Foundation provides them with the opportunity to be trained and involved in the correctional process, thus reducing their dependence on external resources. This is especially relevant in conditions of staff shortage and the need for continuous interaction with the child outside the school walls. 

The model of inclusion implemented by the “Bolashak” Foundation is fundamentally different from the isolationist approach, which implies placing a child in a specialized environment. On the contrary, it is focused on joint learning, social adaptation and acceptance of differences as a norm. Moreover, the Foundation's activities are not limited to point initiatives: it actively works with government agencies, creates methodological manuals and supervises the training of specialists, including international educational formats, internships and exchanges. This is not always visible from the outside, but it is precisely these forms of partnership between public and state institutions that create the prerequisites for the sustainable development of an inclusive system in the long term. 

Against the background of systemic gaps in the field of early intervention and comprehensive support for children with ASD, the Foundation is essentially taking over functions that have not yet been realized at the institutional level, forming from scratch a working infrastructure of support on the basis of schools and kindergartens. 

Despite progress in public and expert perceptions of autism, Kazakhstan still faces a range of persistent institutional constraints. Among the most acute are the lack of a comprehensive state strategy for persons with autism spectrum disorders (ASD), a chronic shortage of qualified personnel, a gap between declarative rhetoric and actual implementation, and deep-rooted sociocultural biases against mental health and neurodiversity. 

Although in recent years both governmental and civil initiatives have demonstrated certain positive changes, their implementation is of a point, fragmented nature and does not lead to the formation of a sustainable system. One of the priority areas remains the comprehensive training of specialists directly involved in supporting children with ASD - from teachers and school psychologists to social workers. The problem lies not only in the lack of training programs, but also in the methodological paradigm itself: the current situation requires a transition from formal mastery of training modules to an applied, practice-oriented model of training, where the experience of direct interaction with the child and his or her family plays a key role. 

The system of early identification is also of particular importance. Under current conditions, PMPCs remain the only official diagnostic mechanism, but the overload of this structure and limited methodological approaches lead to significant delays in diagnosis. Against this background, the deficit of specialized services is particularly critical: multidisciplinary teams, early help centers, and psychological consultations. This is not always noticeable in large cities, but in rural areas the situation is aggravated by geographical remoteness and economic inaccessibility of even basic services. 

Nevertheless, existing initiatives - including the development of inclusive classrooms in schools and the activities of the Bolashak Foundation - confirm that with professional competence and administrative will it is possible to form flexible, locally adapted models of inclusion. However, without proper institutionalization - through legal frameworks, budgetary funding and external control mechanisms - such practices risk remaining exceptions rather than elements of systemic policy. 

Inclusive education in the modern sense is not only a formal right of a child to study at school. It is an indicator of the maturity of society, capable of including vulnerable groups without leveling their peculiarities. Today, Kazakhstan faces a historical challenge: either to consolidate the existing experience into a single, sustainable system, or to continue to remain in the space of private initiatives that have no institutional continuation. 

This article represents the view of its author(s) and does not necessarily represent the view of the IACAPAP's bureau or executive committee.

IACAPAP Bulletin, Issue 78